Information for young people about 'Transition: understanding it and making it work'.

Why was this research carried out?

As young people get older, children's services and units become less suitable and most young people move on from children's services to adult services.

This project is looking at how young people with long term health conditions are 'transitioned' to a new service.

What is transition?

The word 'transition' is used to describe the process of planning and moving on from children’s services. The way transition happens and when it happens is different in different hospital and services. In this study we wanted to find out more about transition from the point of view of young people, parents and health professionals. We wanted to know what works well, what does not work well and what could be done to improve services for young people.

Who was involved?

Four hospital trusts in London were involved in the study: University College London Hospitals, Great Ormond Street Hospital, Chelsea and Westminster Hospital and Guys and St Thomas' Hospitals.

We invited young people aged between 13 and 21 years old with a long-term health condition to take part. Young people who went the hospitals mentionned above were given information about the study by the health professionals they saw and we also asked some health charities to put information about the study on their websites inviting young people to get in touch with the study team if they were interested in taking part.

13 young people and 11 parents took part. Some young people had already moved to adult services and some were still receiving child services.

We also spoke to 21 experts from across the UK, leading on transition from child to adult care and 36 health professionals who worked at the hospitals involved in the study.

What did we do?

Workshops, focus groups and interviews were held with the young people, parents and professionals who took part.

We asked the people who took part about their experiences of transition and how they thought transition could be improved. We also carried out a review of the literature, to see what had been written about transition.

Our aim was to use the information we had gathered to develop a set of benchmarks for transition (a benchmark is a standard that services can measure themselves against to see how they are doing, where they can improve and can help services to share best practice/care). The researchers analysed the information gathered and pulled out a list of factors that were mentioned as being important when young people move to adult care, along with some examples of best care/practice in each area. The researchers worked with a group of young people and parents to select which factors should be included in the benchmarks and the examples of good care. The benchmarks were sent out to the professionals, parents and young people involved in the study for comment and were refined based on the feedback recieved. The benchmarks were sent out a final time for further comments.

What did we find out?

What did young people say?

Young people told us what was important to them regarding transition. Young people said, ‘preparation is key’; they wanted early information about transition, help to gradually take over the management of their health condition from their parents and recognition that everyone is different. Young people wanted to be treated ‘like a teenager’ – not a child, not an adult, this involved: having letters addressed to them, professionals speaking directly to them, explaining things in a way they could understand and being listened to.

The young people spoke a lot about the skills and knowledge they wanted to be helped to develop in preparation for moving to adult care. They wanted a chance to gradually practice skills such as talking to doctors without a parent there whilst still in children’s services with familiar health professionals.

What did parents say?

Parents raised concerns about their son/daughter moving on to adult services. Their main worries were about the, ‘unknown’, not knowing who will care for their son/daughter, what the care will be like and how their son/daughter will cope with taking on more responsibility for their own health.

Like young people, parents said what would help them was good communication and information about transition and having a clear plan.

What did the experts and professionals say?

The experts spoke about how, ‘things have become stuck’ and how changes need to be made in order to improve transition. These changes included ‘changing the mind-set’ of professionals through training about adolescence and the needs of young people, more ‘joined-up thinking’ across child and adult services and breaking down barriers hospital have such as a fixed age young people are moved to adult care.

The professionals discussed the barriers to putting in place transition services but also about how some of these had been overcome. Examples of initiatives to improve transition were shared such as: holding transition days for families, joint clinics with the child and adult teams and development of documentation for transition. It was evident that there was little sharing of these strategies as professionals working within the same hospitals were not aware of what colleagues from different specialities had put in place.

Benchmarks for Transition

Using the information we gathered we worked with young people, parents and professionals to develop the benchmarks for transition. For young people and their parents to experience timely and effective transition eight factors were developed from the data: 1) moving to manage a health condition as an adult, 2) support for gradual transition, 3) co-ordinated child and adult teams, 4) services ‘young people friendly, 5) written documentation, 6) parents, 7) assessment of ‘readiness’ and 8) involvement of the GP.

Under each factor is a list of things that would show good practice in that area. For example, some indicators for Factor 1 are: a) Ensure the young person understands their health condition (including information about their treatment when they were younger and how it may affect them now and in the future) b) The young person is helped to make decisions about the management of their condition and health at a pace appropriate to their needs.

If you would like a copy of the benchmarks please contact the research team using the details on the 'contact us' page.

Resources for young people

Below is a selection of links about health and transition you may find useful.

Research study on transitionhttp://research.ncl.ac.uk/transition/index.html
Northumbria Healthcare NHS Foundation Trust and Newcastle University have developed a research programme that aims to answer this question - ‘How can health services contribute most effectively to facilitating successful transition of young people with complex health needs from childhood to adulthood?’. This site gives more information on their work.

Stepping Up website http://steppingup.ie
Irish website providing information about transition for young people, including films of young people telling their 'transition stories' and 'top tips' from young people who have already moved to adult care.

Children's Liver Disease Foundationhttp://www.cldf-focus.org/
This website for young people has information about childhood liver disease and living with liver disease. It also features young people’s stories.

The Somerville Foundationhttp://www.thesf.org.uk/
Information for young people born with a heart condition. In the 16-25 year olds area on the webiste there is some information about transition and a 'Guide to Adult Cardiac Care'.

Young Mindshttp://www.youngminds.org.uk/
Young Minds is committed to improving the emotional wellbeing and mental health of children and young people by providing expert knowledge to professionals, parents and young people.

Young People

Parents

Parents

Information for parents about the study 'Transition: understanding it and making it work'.

Why did we do this research?

The period of growing up into adulthood is known as ‘transition’. It covers all aspects of growing up including education, employment and personal relationships.

Health is just one aspect of transition and for a young person their health may not be the top priority or as important to them as doctors think it should be. Health services need to make sure they look after health issues in such a way that they integrate well with all the other parts of a young person’s life.

Understanding transition - from all standpoints

This project looked at how young people with long term health conditions are transitioned from one service to another. In this study, we wanted to find out more about transition from the point of view of young people, parents and health professionals. We wanted to know what works well, what does not work well and what could be done to improve services for young people.

What we did

Workshops, focus groups and interviews were held with:

1) Stakeholders from across the United Kingdom, leading on transition for young people from child to adult health care

2) Health professionals working with young people locally in the London area at the four study sites (from both child and adult services)

3) Young people aged 13 to 21 years old with a long-term health condition and their parents. Young people were recruited from the four study sites and through charities via newsletters and social media.

The groups/interviews focused on: experiences of transition, barriers and facilitators to transition. Additionally, the young people and parents were asked to develop a list of their ‘top 10 essential elements of transition’.

A literature review was also planned for this phase; the team were able to join an existing Cochrane review.

Creating standards that meet the needs of young people

Our aim was to write some standards/benchmarks that outline what should happen when young people move from child to adult care and we hope that the recommendations we make will be used to help plan transition services for young people in the future.

Two researchers analysed the information gathered and pulled out a list of factors that were mentioned as being important when young people move to adult care, along with some examples of good care/practice in each area. The researchers worked with a group of young people and parents to select which factors should be included in the benchmarks and add more examples of good care. The benchmarks were sent out to all the experts, professionals, young people and parents involved in the study for comment and were refined based on the feedback received. The refined benchmarks were sent out again to everyone involved for final comment.

Our findings

Young people said...

Young people told us what was important to them regarding transition. Young people said, ‘preparation is key’; they wanted early information about transition, help to gradually take over the management of their health condition from their parents and recognition that everyone is different. Young people wanted to be treated ‘like a teenager’ – not a child, not an adult, this involved: having letters addressed to them, professionals speaking directly to them, explaining things in a way they could understand and being listened to. The young people spoke a lot about the skills and knowledge they wanted to be helped to develop in preparation for moving to adult care. They wanted a chance to gradually practice skills such as talking to doctors without a parent there whilst still in children’s services with familiar health professionals.

Parents said...

Parents raised concerns about their son/daughter moving on to adult services. Their main worries were about the, ‘unknown’, not knowing who will care for their son/daughter, what the care will be like and how their son/daughter will cope with taking on more responsibility for their own health. Like young people, parents said what would help them was good communication and information about transition and having a clear plan.

“You want to know what to expect, what will be so different compared to what you were used to”.

“I believe that once you’re in adult care, you’re just a number, you know, it’s a totally different care”

“As a Mum it’s absolutely terrifying to have to let go and to trust that X understands her conditions so well that I don’t have to worry…”

The experts and professionals said...

The experts spoke about how, ‘things have become stuck’ and how changes need to be made in order to improve transition. These changes included ‘changing the mind-set’ of professionals through training about adolescence and the needs of young people, more ‘joined-up thinking’ across child and adult services and breaking down barriers hospital have such as a fixed age young people are moved to adult care.

The professionals discussed the barriers to putting in place transition services but also about how some of these had been overcome. Examples of initiatives to improve transition were shared such as: holding transition days for families, joint clinics with the child and adult teams and development of documentation for transition. It was evident that there was little sharing of these strategies as professionals working within the same hospitals were not aware of what colleagues from different specialities had put in place

Benchmarks for transition

Using the information we gathered we worked with young people, parents and professionals to develop the benchmarks for transition. For young people and their parents to experience timely and effective transition eight factors were developed from the data: 1) moving to manage a health condition as an adult, 2) support for gradual transition, 3) co-ordinated child and adult teams, 4) services ‘young people friendly, 5) written documentation, 6) parents, 7) assessment of ‘readiness’ and 8) involvement of the GP.

Under each factor is a list of things that would show good practice in that area. For example, some indicators for Factor 1 are: a) Ensure the young person understands their health condition (including information about their treatment when they were younger and how it may affect them now and in the future) b) The young person is helped to make decisions about the management of their condition and health at a pace appropriate to their needs.

If you would like a copy of the full benchmarks document please contact the research team using the details on the 'contact us' page.

Resources for parents and carers

Below is a selection of links that you may find useful.

Information for parents and carers of young people:

Family liveshttp://familylives.org.uk/gotateenager
Information about parenting a teenager. Family Lives (formerly Parentline Plus) is a national charity providing help and support in all aspects of family life. It is available 24 hours a day, seven days a week through its free Parentline.

The Transition Information Network is a source of information and good practice for disabled young people, families and professionals. They are a specialist network of the Council for Disabled Children set up to provide targeted information and resources about transition through online resources, publication and events.

Professionals

The Study - Transition: understanding it and making it work

Background to the study

An increasing number of children with chronic conditions are now surviving into adulthood. Thus there are an increasing number of children with chronic health needs or complex disabilities who will require ongoing specialised care. The provision of health care for this group of young people has been the focus of attention for some time.

In 2010 Sir Ian Kennedy shared his concerns that transition, ‘long the cause of complaint and unhappiness’, was a critical area for service improvement, as existing abrupt transfers were failing to meet the needs of young people. He called for further funding to enable a shift in focus towards the needs of young people and away from the established ‘bureaucratic barriers’ between child and adult services. McDonagh (2006) argues that although there are many compelling arguments that something needs to be done about transitional care, many practitioners and policy makers are unsure of what is to be done and/or how to implement such changes.

Our research proposal grew out of a shared interest in improving services for young people and their families. Ensuring a seamless transition is one of the challenges facing many health care providers.

Aims and purpose of the study

The purpose of this study was to better understand the nature of transitional care in order to develop a clinical practice-benchmarking ‘tool’.

Our aims were to:

1. Explore young people’s and parents’/carers’ views on how best to achieve continuity during transition from child to adult services.

2. Explore the views of health care professionals working with a range of childhood chronic conditions on how best transition can be introduced and sustained.

3. Detail a range of transitional models that best describe approaches to finding solutions to organisational barriers.

4. Describe and inform client focused best practice that will facilitate the transition of young people from child to adult services.

5. Develop and nationally disseminate a clinical practice benchmarking tool to support the structured comparison and sharing of good practice in the transition of young people from child to adult services.

Methods

This research involved three phases:

Phase 1 – Data collection

This was a qualitative study. Workshops, focus groups and interviews were held with:

1) Stakeholders from across the United Kingdom, leading on transition for young people from child to adult health care

2) Health professionals working with young people locally in the London area at the four study sites (from both child and adult services)

3) Young people aged 13 to 21 years old with a long-term health condition and their parents. Young people were recruited from the four study sites and through charities via newsletters and social media.

The groups/interviews focused on: experiences of transition, barriers and facilitators to transition. Additionally, the young people and parents were asked to develop a list of their ‘top 10 essential elements of transition’.

A literature review was also planned for this phase; the team were able to join an existing Cochrane review.

Phase 2 - Benchmark development

Two researchers analysed the transcripts and information gathered from these groups and using qualitative content analysis (Morgan, 1993) extracted a list of factors that were mentioned as being important when young people move from child to adult health care, along with some examples of good care/practice in each area. This list of factors was sent out to young people and parents for them to select the factors they thought should be included in the benchmark. They were also asked to add any additional factors that had been missed along with more examples of good care/practice in each area. The benchmarks were refined following the comments from young people and parents and then sent out to the same group of young people and parents again to add in statements of best and poor care/practice for each of the factors. The benchmarks were sent out to all the stakeholders, professionals, young people and parents involved in the study so far for comment and were refined based on the feedback received. This refined document was finally distributed to the professionals, stakeholders and families for final comment.

Phase 3 – Dissemination

The final phase involves sharing our findings through publications, presentations and the study website.

Findings

Twenty stakeholders attended the groups, from various professional roles within health care and social care. The stakeholders had expertise in working with young people with many different health conditions and disabilities. One telephone interview was carried out with a stakeholder who was unable to attend any of the focus group meeting dates. The stakeholders spoke about how, ‘things have become stuck’ and how changes need to be made in order to improve transition. These changes included ‘changing the mind-set’ of professionals through training about adolescence and the needs of young people, more ‘joined up thinking’ across child and adult services and breaking down organisational barriers.

A focus group was held at each of the four study sites which were attended by 36 health professionals (from both child and adult services). The professionals discussed the barriers to implementing transition services but also about how some of these had been overcome. Examples of initiatives to improve transition were shared such as holding transition days for families, joint clinics and development of documentation for transition. It was evident that there was little sharing of these strategies as professionals working within the same Trusts were unaware of what colleagues from different specialities had implemented.

Two workshops were held which were attended by nine young people and nine parents. Two more workshops were planned but had to be cancelled due to poor recruitment and young people being unable to attend (mainly due to being unwell or having other commitments). Interviews were offered to young people and parents who were unable to attend a workshop; four young people and two parents took part in interviews. Young people said, ‘preparation is key’; they wanted early information about transition, help to gradually take over the management of their health condition from their parents and recognition that everyone is different. Young people wanted to be treated ‘like a teenager’ – not a child, not an adult, this involved: having letters addressed to them, professionals speaking directly to them and explaining things in a way they could understand and being listened to. Parents raised concerns about their son/daughter moving on to adult services:

“You want to know what to expect, what will be so different compared to what you were used to”.

“I believe that once you’re in adult care, you’re just a number, you know, it’s a totally different care”

“As a Mum it’s absolutely terrifying to have to let go and to trust that X understands her conditions so well that I don’t have to worry…”

Like young people, parents said what would help them was good communication and information about transition and having a clear plan.

Benchmarks for transition from child to adult health services

The need for change, in order to best meet the needs of young people, and parents during transition is very evident. Through talking to professionals in this study we found some excellent examples of initiatives to improve transition and how barriers to putting these into place have been overcome. These initiatives need to be shared within and between Trusts. The benchmarks for transition indicate young peoples and parents’ needs and preferences regarding transition to adult care. As such they offer an example of a practice guide to support transition and could facilitate the sharing of good practice.

The benchmarks are available online through UCLB's licensing portal. To accomapny the benchmarks is a guide to using them, a benchmarking document and a presentation that can be used to introduce the benchmarks to other team members. Please get in touch if you use the benchmarks as we would appreciate any feedback on their use in practice.

Susie Aldiss (Researcher in Child Health, London South Bank University)

Useful resources on transition and young people’s services for professionals

NICE guidance on transition:

In Februray 2016 NICE published new guidance, 'Transition from children's to adult's services for young people using health or social care services. This was followed by publication of the quality standard, 'Transition from children's to adults' services' in December 2016. https://www.nice.org.uk/guidance/ng43

Report of the Children and Young People’s Health Outcomes Forum (Department of Health, 2012)http://www.dh.gov.uk/health/2012/07/cyp-report/
The Children and Young People’s Health Outcomes Forum has published its proposals on how health-related care for children and young people can be improved.

'Developmentally Appropriate Healthcare Toolkit'https://www.northumbria.nhs.uk/quality-and-safety/clinical-trials/for-healthcare-professionals/
This toolkit gives practical suggestions about how healthcare can be tailored to young people’s needs as they develop and change through adolescence into young adulthood – such care is termed ‘Developmentally Appropriate Healthcare’. The toolkit is designed to support everyone working in the NHS, from clinicians to chief executives, to promote the health of young people and to play their part in making healthcare work for this age group

Council for Disabled Children - Transition Information Networkhttps://councilfordisabledchildren.org.uk/transition-information-network
The Transition Information Network is a source of information and good practice for disabled young people, families and professionals. They are a specialist network of the Council for Disabled Children set up to provide targeted information and resources about transition through online resources, publications and events.

Together for Short Lives - transition resourceshttps://www.togetherforshortlives.org.uk/changing-lives/developing-services/transition-adult-services/research-best-practice/
Together for Short Lives has produced a range of transition resources to support the ongoing development of care and support specifically for young people with life-limiting or life-threatening conditions. They have resources aimed at both professionals and young-people themselves and their families. This page highlights some key resources and information on transition – from Together for Short Lives and from other organisations. The transition pathway, 'Stepping Up', outlines a best practice framework and approach and is a good starting place for all practitioners.

The preparing for adulthood programmehttp://www.preparingforadulthood.org.uk/
Funded by Department for Education (DfE), they provide expertise and support to local authorities and their partners to embed preparing for adulthood from the earliest years. We work to ensure that young people with SEND (special educational needs and disability) achieve paid employment, independent living, housing options, good health, friendships, relationships and community inclusion.

Making health services adolescent friendly: developing national quality standards for adolescent friendly health services (World Health Organization, 2012)http://www.who.int/maternal_child_adolescent/documents/adolescent_friendly_services/en/index.html
This guidebook sets out the public health rationale for making it easier for adolescents to obtain the health services that they need to protect and improve their health and well-being, including sexual and reproductive health services.

Transition together website (Walsall Healthcare NHS Trust)http://www.healthtransition-walsall.nhs.uk/
The aim of this site is to enable young people with impairments to become independent in accessing web based information and guidance to support their transition into the adult world.

Disclaimer notice:
This website presents independent research funded by the Burdett Trust. The views expressed are those of the authors and not necessarily those of the Burdett Trust, London South Bank University or the NHS.